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08/26/2006 01:59:14 AM · #1 |
So I know at of least a handful of people on this site who have chronic pain. And of course that affects things like photography.. it afffects every aspect of our lives. I thought that maybe if there were a certain thread where we could talk and share stuff, it'd be like a mini support group. It is so nice when people can really understand what it is like to go through certain things.
Nothing in this thread is meant to substitute for the advice of a qualified health care professional.
So, I will start sharing, I guess - I hope others will too.
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I have been diagnosed with fibromyalgia. My hope is that it is actually untreated hypothroidism that causes my pain - and that if I can manage to get treated for that, I hope the pain will go away (there is no cure for fibro). I am blessed because I still have the ability to do many things, am not bedridden... my heart goes out to people who are not so fortunate.
There are so many beautiful places I would like to photograph but because of having low energy and of pain when driving, I most often photograph things close to home. That has been somewhat of a blessing though, as this has taught me to see beauty in all of God's creation. Some of the same "boring" things I see every day can take on a whole new meaning when seen through my camera.
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LINKS:
CFS Talk.com - A forum for Chronic Fatigue Syndrome support groups in Northern and Central Virginia.
Message edited by author 2006-08-26 19:54:55. |
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08/26/2006 02:07:47 AM · #2 |
I was also diagnosed with Fibromyalgia, but I think it's a misdiagnosis. Fibro seems to be a common way for Dr's to say they can't really tell what's wrong! I don't think my pain is bad enough for it to be fibro, and it comes and goes. There are times, however, when I simply can't sleep and everything hurts. It will be that way for a week or two, then go away again overnight!
It does cause one to slow down. I'm grateful that my pain is not constant, but I'd sure like to know what causes it! My sleeplessness is probably the worst part, but also a mixed bag of blessings. Lots of peaceful hours when everyone else is sleeping. Time to reflect, pray and of course...work on photos! :)
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08/26/2006 02:11:35 AM · #3 |
:(
I'm a pain in the ass. That count? |
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08/26/2006 02:14:44 AM · #4 |
Originally posted by jpochard:
I was also diagnosed with Fibromyalgia, but I think it's a misdiagnosis. Fibro seems to be a common way for Dr's to say they can't really tell what's wrong! I don't think my pain is bad enough for it to be fibro, and it comes and goes. There are times, however, when I simply can't sleep and everything hurts. It will be that way for a week or two, then go away again overnight! |
*nod* Misdiagnosis is common with stuff like this. I don't want to say fibro doesn't exist, but people DO need to follow up on a lot of other disorders to make sure they are not what's going on.
Originally posted by jpochard:
It does cause one to slow down. I'm grateful that my pain is not constant, but I'd sure like to know what causes it! My sleeplessness is probably the worst part, but also a mixed bag of blessings. Lots of peaceful hours when everyone else is sleeping. Time to reflect, pray and of course...work on photos! :) |
If you haven't done this already, I'd encourage you to keep a health diary. Things like what time you sleep and wake, what foods you eat, what happened emotionally during the day, what physical activity you did, etc. It might give you some clues or help a doctor get more ideas.
I do understand the peaceful thing, so much. I mean, here it is two in the morning and I'm on the computer because others are in bed and I can have the house to myself. Now if only I could get a not-pain-causing computer chair... LOL. |
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08/26/2006 02:15:23 AM · #5 |
Originally posted by BradP:
:(
I'm a pain in the ass. That count? |
Ummm... I'm gonna have to go with "not really" ;-) |
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08/26/2006 02:17:24 AM · #6 |
Originally posted by jpochard:
There are times, however, when I simply can't sleep and everything hurts. |
I HATE this. Need more sleep 'cause I don't get deep sleep anyway and so I need as many hours as I can get, in order to help with the pain, but the pain causes not sleeping well and the not sleeping well makes me hurt more and argh!
I'm trying to learn how to break that cycle though. One thing I'm working on is stretching before bed and when I wake up, and another is when I'm lying in bed, going through the "trigger points" in my body and trying to mentally relax the muscles. |
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08/26/2006 02:24:12 AM · #7 |
I have CFS (as you know Kelly). My aches and pains aren't as bad but we share a lot of the same issues. My biggest problem is trouble thinking and being worn out for days by the littlest things. I can't drive for more than a few minutes and 99% of my time is spent in my basement, so I can definately relate.
There's not much to it yet (not many users yet) and it's geared mainly towards CFS and FMS people in Virginia but you are welcome to visit my site CFS Talk.com. It hasn't officiially been launched yet but has the support of the Northern Virginia and Central Virginia CFS, FMS, MVP support groups. They will be e-mailing the URL to roughly 1,000 suppoort members in the next few days so i'm hoping it pics up a bit. In anycase, once it get's off the ground there should be some good information in there for this sort of thing :)
I love photography but most days I have trouble accomplishing the simplest things (hence I've only entered 2 challenges). DPchallenge is great though because I can enjoy the threads, feel like I connect with people and enjoy some great photography! |
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08/26/2006 02:30:31 AM · #8 |
Originally posted by klstover:
Originally posted by jpochard:
There are times, however, when I simply can't sleep and everything hurts. |
I HATE this. Need more sleep 'cause I don't get deep sleep anyway and so I need as many hours as I can get, in order to help with the pain, but the pain causes not sleeping well and the not sleeping well makes me hurt more and argh!
I'm trying to learn how to break that cycle though. One thing I'm working on is stretching before bed and when I wake up, and another is when I'm lying in bed, going through the "trigger points" in my body and trying to mentally relax the muscles. |
I have sleep issues... well HAD sleep issues. I listen to a CD as I sleep now that does "brainwave entrainment" to put my brainwaves into the correct patterns as I sleep. Ever since I started I haven't had any trouble falling asleep, staying asleep and I have an easier time getting up. Let me know if you want more info on it (I don't want to hog up the thread).
I am EXTREMELY chemical/medication sensitive so I needed something else to help me sleep. Drugs don't really help anyway because they don't do anything to regulate the KIND of sleep you get. |
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08/26/2006 02:35:53 AM · #9 |
Originally posted by klstover:
Originally posted by jpochard:
I was also diagnosed with Fibromyalgia, but I think it's a misdiagnosis. Fibro seems to be a common way for Dr's to say they can't really tell what's wrong! I don't think my pain is bad enough for it to be fibro, and it comes and goes. There are times, however, when I simply can't sleep and everything hurts. It will be that way for a week or two, then go away again overnight! |
*nod* Misdiagnosis is common with stuff like this. I don't want to say fibro doesn't exist, but people DO need to follow up on a lot of other disorders to make sure they are not what's going on.
Originally posted by jpochard:
It does cause one to slow down. I'm grateful that my pain is not constant, but I'd sure like to know what causes it! My sleeplessness is probably the worst part, but also a mixed bag of blessings. Lots of peaceful hours when everyone else is sleeping. Time to reflect, pray and of course...work on photos! :) |
If you haven't done this already, I'd encourage you to keep a health diary. Things like what time you sleep and wake, what foods you eat, what happened emotionally during the day, what physical activity you did, etc. It might give you some clues or help a doctor get more ideas.
I do understand the peaceful thing, so much. I mean, here it is two in the morning and I'm on the computer because others are in bed and I can have the house to myself. Now if only I could get a not-pain-causing computer chair... LOL. |
I stay up late because it seems that's the time I can finally think clearly. In the morning I have trouble thinking of how to do the simplest tasks. The problem is I get sleepy late at night (there is a big difference between fatigued and sleepy). I almost dread going to bed because I know in the morning my brain won't work for hours. |
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08/26/2006 02:39:15 AM · #10 |
L2,3 and 4 are ruptured from last I heard. Although they want more tests to make sure.
There 'might' be nerve damage but those tests were 'inconclusive' Which I think is BS. Because if its supposed to work, and works on and off... there is a problem.
I have to fight with the VA to get my treatment and all they want to do is give me drugs. I hate drugs and I go months before I can't stand the pain before I have to refill or even get a persperiptin for the pain.
I can't work a normal job. can't sit or stand for to long have to keep changing possition. so I don't have a job. So it is really difficult for me to even get to the damn doctor. Specaily when they want me to go out of town for some stupids tests.
Family.. nope... friends... nope.
Person I am staying with, allows me to do housework to pay for my room and board. But it isn't enough for me. I learned a hard days work for hard earned pay. I don't feel like I am pulling my weight.
But, I am stuck. I am in a serious rut and I don't know how to get out of it.
As a last ditch effort, i applied to some online school so to finish my BA in busines Management. I have an AAS in it already. only gonna put myself in debt 20k more.
Been trying to submit to stock agenecies, they let me in, but don't ever except any images.
Been trying to do network marketing.. can't get nothing going there.
I have tried working with Vocational Rehab. I have been with two agences in two differnt states..> Both treated me the exact same. So bad I wrote a letter to the Congressman and Senator. They replied and asked me to sign a release of information so they could look into the matter more. I did, and its been 9 months still nothing.
It has been a year with the second agency and have Gooseegg to show for my efforts.
Is the World out to get me? Probably not... I just havn't caught any breaks.
Ohh yeah.. a year ago, I basicly had to leave 90% of my possestions behind and start over.
So, I have constant pains. I have migrains (from the military) I have stress, guilt, ancexity, depression, overweight, naturaly high bp, and well... I havn't smoked in the last year... although lately I have been wanting to start again.
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08/26/2006 04:16:09 AM · #11 |
T3 and T4 are naturally fused. This prevents my rib cage from expanding properly, so I have some breathing issues. I also have degenerative disk disease, so I'm losing a lot of the disks in my back.
My hips don't rotate correctly, which adds to the lower back pain. There used to be a time when I'd wake up paralyzed from the waist down. There is definitely a lot of nerve damage in my legs, but they never could pin it down to anything other than "there's something not quite right" as I have about 50% feeling in my legs. But, that's been like that so long, it's like 100% feeling to me because I don't know any different.
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08/26/2006 04:44:48 AM · #12 |
I've never said anything on DPC before about my chronic pain but it's bothering me tonight so perhaps saying something will help it.
I have had Chronic Facial Pain for 16 years now. It really gets me down sometimes. The past few months it has been worse than usual. I have a lot of allergies which bother my sinuses - got a bad sinus infection last week and that pressure makes the facial pain a lot worse.
The doctors don't know really what causes it, probably something wrong with the tempromandibular nerve. Have had all sorts of tests, scans and things and nothing shows up.
Mosty, I try to ignore it as best I can. A heating pad on the side of my face or behind my neck sometimes helps. Medication doesn't seem to help very much.
When you have chronic pain you never take life for granted anymore. |
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08/26/2006 07:10:28 AM · #13 |
| My Hypothyroidism/hashimotos disease is being treated and has since I was 17 but It's alawys messed up. they change the dosage constantly and there are times when i feel good/ok but there are other long stretched where it hurts every muscle to move and the bottoms of my feet and palms of my hands feel really burnt and it hurts like heck to walk or touch anything. I also have heart trouble/panic attacks and migraines. beyond the everyday sinus trouble and skin issues related just to being allergic to everything. so I feel for ya. when i was diagnosed with hypothyroidism at 17 the first website i read about it called it a "horrid miserable existance". lol. I thought well thats a bit dramtatic, turns out they werent that far off really. but i have two special needs children and my daughters diabetic care takes up way too much of my time to really worry about me anymore usually. and thats a good thing. |
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08/26/2006 08:04:43 AM · #14 |
Originally posted by klstover:
There are so many beautiful places I would like to photograph but because of having low energy and of pain when driving, I most often photograph things close to home. That has been somewhat of a blessing though, as this has taught me to see beauty in all of God's creation. Some of the same "boring" things I see every day can take on a whole new meaning when seen through my camera. |
I totally agree with that and with other opinions shared there.
Suddenly life can change (to something worse) and it's difficult to assume that usual things we used to do are now impossible or painful to do.
I'm lucky because I always have had the support of my husband and I have re-discovered photography.
Dpchallenge has been (and still is) a wonderful help for me , can't remember now the last challenge I entered but many times I imagine the photo I would have submitted ...
Sometimes people don't understand how it is to live with chronic pain , it's not a broking leg or similar , sometimes the pain is not visible to the others.
I hate when I hear "you have a nice face today , you surely are better" , I say nothing , those are the results of a touch of make-up and a fake smile .
Message edited by author 2006-08-26 08:27:32. |
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08/26/2006 11:23:52 AM · #15 |
Originally posted by Mambe:
Originally posted by klstover:
There are so many beautiful places I would like to photograph but because of having low energy and of pain when driving, I most often photograph things close to home. That has been somewhat of a blessing though, as this has taught me to see beauty in all of God's creation. Some of the same "boring" things I see every day can take on a whole new meaning when seen through my camera. |
I totally agree with that and with other opinions shared there.
Suddenly life can change (to something worse) and it's difficult to assume that usual things we used to do are now impossible or painful to do.
I'm lucky because I always have had the support of my husband and I have re-discovered photography.
Dpchallenge has been (and still is) a wonderful help for me , can't remember now the last challenge I entered but many times I imagine the photo I would have submitted ...
Sometimes people don't understand how it is to live with chronic pain , it's not a broking leg or similar , sometimes the pain is not visible to the others.
I hate when I hear "you have a nice face today , you surely are better" , I say nothing , those are the results of a touch of make-up and a fake smile . |
Yea, I just "love" it when people tell me "Oh, you sound better today" like I had a case of the sniffles or something. |
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08/26/2006 07:36:21 PM · #16 |
Originally posted by Megatherian:
I have CFS (as you know Kelly). My aches and pains aren't as bad but we share a lot of the same issues. My biggest problem is trouble thinking and being worn out for days by the littlest things. I can't drive for more than a few minutes and 99% of my time is spent in my basement, so I can definately relate. |
Aww boo. Is your basement decorated nicely and comfortably at least?
Originally posted by Megatherian:
There's not much to it yet (not many users yet) and it's geared mainly towards CFS and FMS people in Virginia but you are welcome to visit my site CFS Talk.com. It hasn't officiially been launched yet but has the support of the Northern Virginia and Central Virginia CFS, FMS, MVP support groups. They will be e-mailing the URL to roughly 1,000 suppoort members in the next few days so i'm hoping it pics up a bit. In anycase, once it get's off the ground there should be some good information in there for this sort of thing :) |
Good luck with the launch! I hope things go very well. It looks like you have some great sections there. I especially like the Accessability Tools idea :-) (and I have wanted a cane/pole like that!)
Originally posted by Megatherian:
I love photography but most days I have trouble accomplishing the simplest things (hence I've only entered 2 challenges). DPchallenge is great though because I can enjoy the threads, feel like I connect with people and enjoy some great photography! |
Stuff that is so simple to many other people is so hard for us sometimes! Whereas someone healthy could go out and walk around for a while taking pictures, sometimes we really have to think about what that is going to do to our bodies and if it's worth it.
Thankfully for me, I have been able somewhat to incorporate photography into my exercising (which I don't have a firm routine for, but am trying to do more and more). And that does help, when I can say "okay, this may not feel the best for my body right now but the walking I will do will make me stronger in the long run". And so I'm doing two good things at once. |
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08/26/2006 07:38:55 PM · #17 |
Originally posted by Megatherian:
I have sleep issues... well HAD sleep issues. I listen to a CD as I sleep now that does "brainwave entrainment" to put my brainwaves into the correct patterns as I sleep. Ever since I started I haven't had any trouble falling asleep, staying asleep and I have an easier time getting up. Let me know if you want more info on it (I don't want to hog up the thread).
I am EXTREMELY chemical/medication sensitive so I needed something else to help me sleep. Drugs don't really help anyway because they don't do anything to regulate the KIND of sleep you get. |
Sure, more info would be great! The kind of sleep is definitely important, you are so right. ... I just had a thought. I am going to have my birthday and Christmas wish lists contain only one thing - "deep sleep" hehe! |
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08/26/2006 07:40:22 PM · #18 |
Originally posted by Megatherian:
I stay up late because it seems that's the time I can finally think clearly. In the morning I have trouble thinking of how to do the simplest tasks. The problem is I get sleepy late at night (there is a big difference between fatigued and sleepy). I almost dread going to bed because I know in the morning my brain won't work for hours. |
I'm sure I have experienced what you mean, but I'd like to make sure I'm on the same page terminologically - could you explain the difference between fatigued and sleepy? |
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08/26/2006 07:47:00 PM · #19 |
Original post edited to add disclaimer.
Medical professionals are good!
Sometimes they don't know all we'd like them to know about chronic pain, of course, but I just want to make sure nobody is going to look to this thread as a substitute for a doctor. :-) |
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08/26/2006 07:50:15 PM · #20 |
Originally posted by littlegett:
But, I am stuck. I am in a serious rut and I don't know how to get out of it. |
Aw, that's such a horrible thing to be going through.
I would encourage you to definitely focus on other aspects of your health besides just the physical. Emotions can *definitely* make us feel worse physically, and if you haven't talked to a doctor about those issues I would encourage you to.
Everyone needs to have people who will be there for you - we are here of course!!! I hope soon you can have not-online people who can support you emotionally.
And don't feel bad about not "pulling your weight"... if you have chronic pain, you *won't* be able to do what you could do without the pain. My thought is, if I am trying my best and other people do not understand that my best is what it is because of my limitations, then their opinion of me (as someone who does not pull her own weight) is based on an incomplete understanding of who I am, and I should not take it to heart. And if I'm not going to let other people think badly about me for this, then I certainly will not feel this way myself! (Well sometimes I feel that way, but I do not **believe** it. I am no "less" because of not getting "enough" done.) |
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08/26/2006 08:25:06 PM · #21 |
this person understands and stuff.
its me. Im the one who doesn't understand.
I look at th ethings i 'used' to do. I look at how I still look now. like a damn miniture shermen tank.
yet, I can't do anything anymore. everything I try, I have been failing at. Not a pychosiss, it is what has been happening.
Don't give up, don't stop trying... thats what I have been doing.. keep on keepin on...
but ya know. Everyone has a breaking point. Just how much failure and rejection, and loneliness can one person take before they snap?
I would love to have a friend around here. I left a really goodone behind when i moved. But, I had no options when I moved. less I stayed undera bridge and just deterated away which some times I think I should have.....
I have seriously run out of options. I don't care for most the comments I get here, they seem idiotic to me.
I don't have online friends iether... I sued to be the king of the internet.. several windows open talking to people.... but it grew old, and childish...
so now im left here... with nothing nowhere to turn nowhere to go...
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08/26/2006 08:47:01 PM · #22 |
Originally posted by littlegett:
this person understands and stuff.
its me. Im the one who doesn't understand.
I look at th ethings i 'used' to do. I look at how I still look now. like a damn miniture shermen tank.
yet, I can't do anything anymore. everything I try, I have been failing at. Not a pychosiss, it is what has been happening.
Don't give up, don't stop trying... thats what I have been doing.. keep on keepin on...
but ya know. Everyone has a breaking point. Just how much failure and rejection, and loneliness can one person take before they snap?
I would love to have a friend around here. I left a really goodone behind when i moved. But, I had no options when I moved. less I stayed undera bridge and just deterated away which some times I think I should have.....
I have seriously run out of options. I don't care for most the comments I get here, they seem idiotic to me.
I don't have online friends iether... I sued to be the king of the internet.. several windows open talking to people.... but it grew old, and childish...
so now im left here... with nothing nowhere to turn nowhere to go... |
I really think you need to find a local support group. It may seem silly or stupid or pointless now but you might be surprised how much it can help. If you get a bad group find another.
This is your life, like it or not, and it's up to you to find a way to be happy with it. You can be happy though, you just have to choose it. |
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08/27/2006 01:18:08 AM · #23 |
Well, I'm going to sound off with experience in this thread. In 1996 I was in a terrible crane accident and broke my neck and back. Long story short, I've had 3 major spinal surgeries to stablize my neck and one major spinal surgery and well over 60 procedures on my low back. I have severe nerve damage in both locations and suffer from severe chronic pain. 11 years now I have dealt with this. I can say that this has been a very tough road for me. With my past and my personality it has been a struggle from the get go. I used to be a hard core action junkie with being in the military for 8 years and then law enforcement, I was addicted to adrenalin and now I struggle to go out and shoot basic assignments for the local paper. I have a rough time just playing with my kids who are 7 and 5. I basically live my life in 6 hour increments. I take medication every six hours and every six hours vary from one to the other. Very tough life. For those of you out there with Fibro please PM me there is help. Wow I never thought I would share this with DPC hmmm. I guess since I'm sharing I'll let you know that yesterday I finally recieved a judges decision on my accident. I WON
YEEEHAAAA I finally won after 11 years of fighting. Lets just say there are 7 digits in this win. FINALLY . Pretty wierds this post pops up the next day.
I can give some advise on the sleep part. Ambien works quite well because it induces REM sleep. ( won't go into details unless you pm me) |
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08/27/2006 02:05:16 AM · #24 |
Originally posted by klstover:
...Aww boo. Is your basement decorated nicely and comfortably at least?...
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It's basically our living room. I have an office with my computer in it and there is my recliner and the TV in another area. The basement is only half underground with a door that goes out to the backyard so I can go out an get some air easily without having to trek up the stairs.
Originally posted by klstover:
Good luck with the launch! I hope things go very well. It looks like you have some great sections there. I especially like the Accessibility Tools idea :-) (and I have wanted a cane/pole like that!)
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The cane is working out awesome. With these "invisible illnesses" I've actually been finding that it helps with people being more considerate when they see me as well, which is an added bonus I hadn't really thought of. I know it's not sexy but but physically I've been noticing it makes a big difference, even more so than I figured it would.
Originally posted by klstover:
Stuff that is so simple to many other people is so hard for us sometimes! Whereas someone healthy could go out and walk around for a while taking pictures, sometimes we really have to think about what that is going to do to our bodies and if it's worth it.
Thankfully for me, I have been able somewhat to incorporate photography into my exercising (which I don't have a firm routine for, but am trying to do more and more). And that does help, when I can say "okay, this may not feel the best for my body right now but the walking I will do will make me stronger in the long run". And so I'm doing two good things at once. |
I wish I could exercise. I have major exercise intolerance with the CFS though so one day of even mild exercise means days or weeks of recovery. If I've rested up for a month and really not pushed things I can do a bit but it's a very delicate balancing act. |
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08/27/2006 02:28:37 AM · #25 |
Originally posted by klstover:
Originally posted by Megatherian:
I have sleep issues... well HAD sleep issues. I listen to a CD as I sleep now that does "brainwave entrainment" to put my brainwaves into the correct patterns as I sleep. Ever since I started I haven't had any trouble falling asleep, staying asleep and I have an easier time getting up. Let me know if you want more info on it (I don't want to hog up the thread).
I am EXTREMELY chemical/medication sensitive so I needed something else to help me sleep. Drugs don't really help anyway because they don't do anything to regulate the KIND of sleep you get. |
Sure, more info would be great! The kind of sleep is definitely important, you are so right. ... I just had a thought. I am going to have my birthday and Christmas wish lists contain only one thing - "deep sleep" hehe! |
It's been a while since I did my research so I'm not going to get into technical details here but basically the body sleeps in 90-100 minute intervals cycling through the 5 stages of sleep. The 5 stages of sleep are basically your brain running at different frequencies. what brainwave entrainment does is play tones which you brain then mimics by going into those frequencies.
Most programs out there have "sleep induction" programs etc to help you fall asleep but then they stop and the rest of the night you are on your own. I too it a step further and after a bunch of research made my own that plays for a full 8 hours. the program I use is The Neuro-Programmer 2. It's not magic and some people talk about using it for meditation and out of body experiences etc. I can't speak to that but I can say it does what it says in terms of the frequency of brainwaves.
As far as Ambien goes, deep REM (stage 5) is important but it's stage 3&4 that are considered "restorative and healing". The majority of CFS and FM patients have a reduced amount of stage 3 and or stage 4 sleep. (my sleep study showed decreased stage 3).
There was a study a while back where they took a group of people and completely deprived them of sleep for something like 2 weeks. All of the test subjects showed the same symptoms as FM. When they were finally allowed to sleep again their symptoms went away. Now I'm not saying sleep deprivation is the cause of FM, but not getting enough sleep or enough of the right kind (stage 3&4) of sleep will definitely make things worse. |
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